Monday, February 23, 2009

Wordless Sunday...1 day late ;)

It's an old picture of Kyle from the NICU, sometimes I look at this and think how can it be 4 years later.....

Thursday, February 19, 2009

Where do I start??

You would think by now I would never, ever say to myself this can't get worse. When Kyle spiked a fever on Sunday I assumed that he had the virus that Alex had on Thursday and Friday. When he started with symptoms similar to the stomach flu we assumed that he had that virus but because his bowels are not working right anyway I again..(my bad) assumed that this is how the virus was coming out. I never thought that both Alex and Jack would get the stomach flu and fever also...never even crossed my mind. Until last night when Jack spiked a fever and Alex crawled into my bed this morning complaining of a belly ache. To say the you know what has hit the fan would be an understatement. Poor Alex, in one week two different illnesses both bad. She's so weak. My bath tub is working in overdrive. As for Kyle, we are now battling blood sugar issues, he gets hypoglycemic...he has dumping syndrome from all the stomach surgeries he has had and the pedialyte is not cutting it. So basically this am I've had to start pushing his food again, he's now mixed half and half peptamen junior and his pedialyte...he'll have to stay on the feeds until we get him back up to full feeds...his poor bowels have just had it. If we can't maintain this we'll be off to the hospital. His Dr is amazing and knows we can handle alot here so she's put it my hands when to make that call...

Sooo in a nut's pretty tense around here...but we are all here in this house and that in itself is a blessing.


Tuesday, February 17, 2009


Kyle's sick..really sick. It started with a fever on Sunday and has turned into him not tolerating any food through his g tube..I'm on my last resort tonight of trying to run some pedialyte, if he can't tolerate that we are off to the hospital in the am...poor little guy...his heart rate has been elevated but so far I have not had to increase his oxygen. Just hoping you all could keep my little guy in your thoughts.


Sunday, February 15, 2009

Wordless Sunday ;)

and yes..I am totally the Mom who lets their kids eat chocolate on Valentines Day for breakfast! ;)

Thursday, February 12, 2009

I could cry

Ok...I did cry was to say a very frustrating day. I won't rehash the whole thing..let's just say after about 10 phone calls I realized that Kyle's referral for the "god" doctor at Boston Children's Hospital was not submitted 2 weeks ago, it was sent on Friday. After going around and around I finally got his nurse secretary on the phone and asked (ok begged) her to please schedule us an appt without all his paperwork (which she still didn't have) She was so know the nice kind that as your telling your kids story she's so nice that you start to cry..she had all of Kyle's information from when we were there last and she made an appt for a consult the second week of March. After the consult we will get the date for all the inpatient testing. If we make it that long...I can tell you something is not right..his stomach and bowels are not acting right, lots of retching and gagging, lots of residuals from his g tube. I feel very helpless..he now asks me "to please help him" when he feels a bad episode coming on. It is to say very heartbreaking. So we wait and we hope and we pray to the man upstairs (who I'm still working on trusting again)

On another all three kids woke up with fevers this am, Mark is on a business trip, and I'm almost out of Motrin. It could be a long day...they are all being amazing, none of them feel good (esp. Kyle) but they are being patient and I'm so thankful for that. I have to add a of Kyle with no oxygen on his sweet face. The boys had just had a bath and Alex was on her way to the dance with her Daddy. Kyle's hair was a little out of control, I think it's time for another hair cut!



Sunday, February 8, 2009

Wordless Sunday

Ok so I know that out in the blog world people do Wordless Wednesday...since I never do anything like everyone else ;) I'll start it on Sundays...mostly because by Sunday I'm beat and wouldn't be able to write a blog if you paid me... so we'll start here.... xoxoxo

Saturday, February 7, 2009

Out of sort

I'm feeling out of sorts tonight, we should be leaving tomorrow for Pittsburgh and I feel somewhat anxious that we are not. Oddly enough we've had a few good days with Kyle and for some reason I feel nervous about that also. Guarded, nervous that if I let some of the peace creep in I'll get smacked again soon...

Kyle has been pretty good the last two's been nice...

We are on hold right now, waiting to hear from Boston Children's Hospital...Kyle's GI dr believes we can get almost all if not all of his testing done down there, so we are back to waiting again. Hoping we can keep Kyle comfortable and happy until we can get some more answers.
I know that this picture has nothing to do with this blog, but I feel so badly that Jack goes so unmentioned at's a picture of my littlest baby..he melts me every time.

Hope your all having a great weekend!



Monday, February 2, 2009


Yes, Kyle graduated from Speech on Thursday, I have to say I was shocked when they told us he wouldn't qualify anymore??!! What kills me is that he was not talking at all a year ago...maybe Mama every once in a while but that was about it. We had the paperwork filed with the state to get him a communication device...and then he got tubes and his adenoids out and 2 months later he was amazingly verbal...sometimes a little over verbal ;) .

I'm attaching a picture of Kyle's last day of speech with Katie, we all love Katie so it was sad for the whole family!

**I have no updates on the medical stuff yet, Kyle's belly was really bothering him this weekend so it's time once again to start pushing some people.**